Breaking Down Barriers
LondonThis is the first opportunity for the BDB network to get together in person since lockdown! 26th September 2023 – London Registration will be from 9:45 am Start 10:00am Finish […]
This is the first opportunity for the BDB network to get together in person since lockdown! 26th September 2023 – London Registration will be from 9:45 am Start 10:00am Finish […]
You are invited to attend our annual conference on Saturday 30th September 2023, at Mercure Daventry Court Hotel, Sedgemoor Way, Daventry, NN11 0SG 10.00-17.00 (Registration from 9.00 am). You will […]
Lafora disease researchers and clinicians at Instituto delle Scienze Neurologiche di Bologna (ISNB) IRCCS will host the 8th Annual Lafora Disease Science Symposium in Bologna, Italy from October 9-10, 2023. Chelsea’s Hope […]
A platform for change CamRARE’s RAREsummit23 welcomes and unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By reflecting on progress made, […]
We are delighted to be hosting our first hybrid BHD Symposium on 13 and 14 October 2023 in London, UK, and online. This is the first time we will be bringing together the whole BHD research community in person since 2015. The event will showcase the current research into BHD and folliculin and we hope […]
Colleagues are warmly invited to attend the 2023 Glasgow Paediatric Research Day to be held on Friday 3rd November at the Teaching and Learning Centre, Queen Elizabeth University Hospital Campus. The programme will feature an invited speakers’ plenary session on “Successes and Challenges of Genomic Medicine”, hosted by Dr Ruth McGowan, Consultant Clinical Geneticist, Royal […]
The London Rare Disease Showcase aims to shed light on the latest innovations and advancements occurring in the field of rare diseases, with special emphasis on the vibrant rare disease landscape in the UK’s capital. Through a series of captivating talks and presentations, experts and thought leaders from various disciplines will share their insights, experiences […]
Come along to learn more about how your voice can help healthcare professionals learn about rare disease. You will be joined by Kate Tatton-Brown and Alison Pope, Clinical Directors at NHS England, as they present the Genomics Education Programme and why it’s important. Please find the link to the zoom webinar here: https://us06web.zoom.us/j/84487083787 We would […]
Medics4RareDiseases and FOP Friends, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England, are hosting an evening reception for healthcare professionals, examining the contributions of patients and families to medical advances in Fibrodysplasia Ossificans Progressiva (FOP). Come and find out how patient advocacy can change the course of rare genetic […]
The aim of the meeting is to inform doctors that rare diseases are collectively common and relevant to every medical career. Very different rare diseases face similar challenges, including navigating healthcare which can be alleviated by a medical profession that understands what living with a rare disease means to a patient and their larger community. […]